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thought i was alone

Posted , 6 users are following.

nannylin
nannylin

I have suffered with LS for about 15 years and had no idea there were so many other women suffering as I was. After being diagnosed I was given a course of Dermovate cream which helped with the intense itching. Over time my labia have fused and sex is impossible. I have recently been advised to see a dermatologist to see if this will respond to treatment or if surgery will be needed. I also suffer from Crohns disease which is flaring at the moment so I am feeling physically ill and pretty depressed but to know this support is here is fantastic. I am not alone.

2 likes, 34 replies

34 Replies

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  • kate207
    kate207 nannylin

    Posted

    Regarding surgery: I had a simple cone biopsy on the most scarred area of my vulva, as they wished to confirm it was Ls and not VIN. What should have taken a max of 10 days to heal took over six weeks, as the tissue just kept breaking down and the stitches just tore through.I ended up with a hole I could put my little finger in. It eventuallly filled in naturally with the help of hot soaks and manuka honey -my dermatologist is very progressive and willing to look to look at alternatives when necessary. Given this hassel over a simple biopsy I would be very wary of surgery as you could end up making things worse.
    • Morrell1951
      Morrell1951 kate207

      Posted

      Kate, that sounds horrible and it also sounds like something I can well imagine happening to my perineum. I just smack my head when I realize how many years I knew I had this weird white flesh that would tear all the time. Why on earth didn't I ask a doctor about that specifically? In fact I did figure out what it was by looking at pictures online. This was maybe seven years ago. So, I thought I had this condition that was basically a word for something women just get. And then I accepted and forgot about it till that gynae last summer took a look and diagnosed it. Hmmm, that sounds familiar. Smack. I wonder how many women are just ignoring it and not asking.
  • Chrisy
    Chrisy nannylin

    Posted

    Hi I know I had this from a teenager and before any sexual activity as I was often sore and tore at the perineum.  I was 56 before I was diagnosed and then it was a new young doctor at my practice that picked up on it.  I think my Gran also had it.  She had vitiligo, diabetes and angina, all of which I also seem to have. All linked to this horrible condition and auto-immune disorder.  I wish they would carry out a survey to see how many people with this disorder can recall symptoms when a lot younger and have other older members of the family who may of had the same condition.  My gran always had lots of creams in her bathroom.....You are not alone there are many of us...unfortunately!!!!!!!!!!!!! but this is a great forum where you can get advice and comfort from other sufferers.  All the best
    • nannylin
      nannylin Chrisy

      Posted

      Thanks Christ I am so glad I found this forum it has already been a great help knowing others are in the same boat. What I am finding hard to understand is that with there seeming to be so many women suffering from LS why is there so little so little information about it generally. I have never seen anything about it In any women's magazine's and no information or advice at routine smear tests (before I had any symptoms) or family planning etc. We all know the importance of examining our breasts regularly why not inform more women about LS and how quickly fusing can occur.
    • Morrell1951
      Morrell1951 nannylin

      Posted

      Nannylin, you're so right. But I've met women here who are so afraid LS will impair their sex life and so their marriages and maybe prevent them having kids. So we sweep it under the rug. I was married, having an awful time with sex and tearing for NINE YEARS before I had my first child. It never crossed my mind that childbirth might be even hader than sex. And even after I had that one and found my episiotomy scar to be troublesome, I had sex exactly one more time, to get pregnant with my second. I was half fused when I left him and even wrote him a letter blaming him for making us celibate for so many years that I had 'lost it' from not 'using it'. I just made my own diagnosis, didn't think of talking to my doctors, who had had their faces down there any number of times and never noticed anything. Geez.
  • Morrell1951
    Morrell1951 nannylin

    Posted

    What we really need is physicians who know what they're looking at when they do a Pap smear. I honestly think they try not to look, try to stay focused on a clinical, internal task. They don't want to be gazing at pussies, I swear that must be it.
    • nannylin
      nannylin Morrell1951

      Posted

      Ridiculous 2am and cos of steroids can't sleep !! I totally understand where you are coming from and agree that health practitioners should open their eyes and do something about what they see. Need to think more about this bit brain getting scrambled with lack of sleep but you are so right.
    • Morrell1951
      Morrell1951 nannylin

      Posted

      Right, you're five hours or so later than here. Hope you can find a nice, boring book till your eyes close. I opended a new discussion about changing the situation with doctors. Sleep tight.
    • nannylin
      nannylin Morrell1951

      Posted

      I'm in UK and going to try to sleep now got my 3 year old granddaughter tomorrow so need to be on my toes !! Let's hope others will think about how to enlighten other women and professionals - you may have started something ! Night my new friend
    • Morrell1951
      Morrell1951 nannylin

      Posted

      Have a good day with the little one. The kids are what's important.
  • Chrisy
    Chrisy nannylin

    Posted

    Hi everyone,

    I tried to contact a tv programme Loose Women here in UK about this problem and the need to bring it to the worlds attention. I got absolutely no where. Not even an email in return from Loose Women's team . I think people just find it too embarrassing. I am not giving up though. I talk to everyone about this problem. My sister is a midwife and I have talked to her about it. At least she might be able to help some women diagnose this problem. I talk to all my friends and found one who actually had it too. We now compare notes regularly and try to help each other with advice. I watched an embarrassing bodies programme recently and there was a man who I would have sworn had this problem like we get all over his private parts and anus, they diagnosed psoriasis. It didn't occur to me that men might have this problem too.

    Hope you are all coping and in a good place at the moment.

    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Men get it, but unless it's really advanced, they get circumcised and they're permanently repaired. No re-scarring like us. I don't see any LS men starting threads here. It's on the fact sheet in the doctors' area here.

      I'm not surprised you're getting an ambarrassed response. Gay men had to really suck it up and shout to the world to get their huge but embarrasing problem attended to. 

      I'm afraid that at the bottom of this shyness is women's anxiety about failing to serve their men's 'needs'. I unfollowed the Facebook group I joined because there was so much chatter about this. Now that I'm not worrying about that and my LS is being treated, my interest is in getting women diagnosed and treated. I suspect a lot of the discomfort of LS is the effects of trying to have sex while flared up.

    • nannylin
      nannylin Morrell1951

      Posted

      I am sure upbringing has a lot to do with the embarrassment and shyness aspect. I really had no idea what my 'bits' were supposed to look like in the first place and would certainly never have spoken to my mother about anything intimate. Maybe the slogan 'mirrors are not just for make up' and access to photos could help in sex education. This would be useful for young females and males.  I also feel that as you get older (I am now 60) I really don't want to have my legs in stirrups with a stranger wearing gloves fiddling with an already painful area !!
    • Morrell1951
      Morrell1951 nannylin

      Posted

      Brilliant, Nannylin! Like getting us to check our breasts for lumps, we need mirrors for vulvar health. Porn has just ruined things for generations of us. Wide open beaver pictures are a huge 'thing'. How on earth can we combat that? I had a whole family of otters passing through the swamp by my house some years back. I Googled it and found this teacher who had a site about otters and beavers, but he had to use the Latin name for beavers, or the school search engines would filter his site out. Geez.
    • Chrisy
      Chrisy Morrell1951

      Posted

      Thanks for the info Morrell,  I have looked up men and ls after this  point .  Quite interesting. 

      Yes I think we will have to make a noise about this before anything happens.

      I'm putting my thinking head on again.

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